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Monday, March 3, 2014

Calvin Wellness Update: Head Heart and Hands

As Calvin has gotten older, his specialist check-ups have gotten more spaced out. This is a big relief, especially because Henry is having so many appointments these days! I'll write a wellness update on Henry in a few days after the two appointments he has coming up this week. For now, here's the latest on Calvin after his recent Cardiology and Speech check ups.

Cardiology

Calvin is having an echo-cardiogram done. He was such a good patient! Thanks to Mickey Mouse ;)

His last cardiology check up was in January. They have been monitoring his VSD since he was about a month old. His appointment always starts with an echo-cardiogram, and on occasion he has also had an EKG, but not this time. The last echo he had at around 12 months old was tough. He was too little to watch TV and he was restless and wiggly. But this time he laid there very still and calm and just watched Mickey Mouse Clubhouse. (Ok, technically he's still too little to watch TV but whatever. Small doses.) They were able to get all the images they needed to check out all the parts of his heart and how his heart is functioning.

The news was good. Not the best possible news, but say, second best. The best news would be that his VSD is closing on its own. It's not. BUT, his heart is functioning basically as if it weren't there. It's not affecting him in any negative or problematic way. His doc said that as long as that continues to be the case, it won't need to be closed (surgically). She even went so far as to say she doubts it will ever need to be closed. She also said that if the time comes that it is causing problems he is likely a candidate for a less invasive procedure using a catheter device which would allow us to avoid open heart surgery. But again, it does NOT require surgery right now or in the foreseeable future. He doesn't have to have a cardiology check up again until he turns 4! Woo hoo!

Speech
Calvin had a speech evaluation done last week with his SLP (speech and language pathologist), Dr. Johnson.

Dr. Johnson and a student doctor (sorry, I don't remember her actual title!) gave Calvin a standardized evaluation that tested both his receptive and expressive language. There were some pictures involved and also some toys and they would say things like "Calvin, could you please hand me the bear?" [Calvin hands bear to doctor.] and "Mr. Bear is thirsty. Could you give him a drink?" [Calvin pretends to let the bear drink from a cup.] Or they would point to something and ask him to name it, and of course he answered in sign language. He did great. There were a couple of items he hadn't really seen before like a cookie (ha.) and ice cubes. The docs seemed impressed with how well he did. Plus they seemed to think he was adorable. Which, of course, he is ;)

They told me that the average score for the test is 100 and they hoped for him to score between 80 and 115. He scored 100 exactly for receptive language. Which I guess is a C? But whatever. The docs were impressed. I was proud of him. For his expressive language, however, he only scored 70. This makes sense. He only has two words that he consistently says out loud, although at last count he knows over 90 signs. I don't know to what extent the test took into account his signing, but they did tell me it was helpful for me to interpret whenever I could tell he was saying something in sign language.

Without knowing more about the test, the scores don't mean that much to me. What is important to me is that Dr. Johnson is recommending speech therapy due to the big gap between what he understands/knows and what he can say out loud. He babbles all the right sounds, including sounds that they weren't sure he'd be able to make because of his cleft palate muscles, but he won't imitate sounds on command. Dr. Johnson seemed to think that with some focused practice via speech therapy, if we can get him to start imitating sounds he could pick up talking quickly. I think she's right. I think he's so close. He knows so many words and he can make the sounds. But for some reason he's just not ready/willing to put it all together! The next step is to talk to our regional center case worker about getting set up with a speech therapist nearby because Dr. Johnson is too far away for us to see her for regular therapy. I feel good about it. I think it's the right thing for Calvin and I'm eager for him to get started.

Sign Language
Though he is still only saying mama (it sounds like "mam") and daddy (sounds like "da-yee") and occasionally other m-words like milk and map, we continue to be amazed by his use of sign language. His sign vocabulary is growing as quickly as I can learn new signs to teach him. Almost 100 signs! And he has started signing sentences! The sentences are missing "core" vocabulary (words like the, of, and...), but they are still complete thoughts.

The first time I noticed him make a three-word sentence he was eating lunch and had this little bear toy from his Duplo set at the table with him. He signed bread eat bear. And proceeded to pretend to make the bear take bites of his sandwich complete with sound effects p-p-p-p-p! The words seem to be out of order, "bear eat bread" might make more sense, unless he was saying "The bread is eaten by the bear," but I definitely got what he meant! Since then I've seen him sign other three-word sentences like Help Piggie, please, when his stuffed animal Piggie has gotten stuck somewhere or Eat more banana, when he wants his favorite food :)

Yesterday we spent the morning at the Academy of Sciences in San Francisco and we saw lots of animals in the rainforest, aquarium, and Africa exhibits. Later as we were getting ready for bed, I asked him if he'd had fun and I asked him what he saw there. He told me fish, bird, penguin, butterfly, horse, alligator and frog. All of which we did see, except a horse, but he had been calling the zebra a horse so I think that's what he meant! I was so proud of him for remembering and being able to understand the question and tell me all those animals!

James and Calvin butterfly watching in the rainforest exhibit

And then this morning:
Calvin: alligator turtle
Me: Alligator? Turtle? Did you see an alligator and some turtles yesterday?
Calvin: alligator turtle eat
Me: Eat? ... Bite? Did the turtle bite the alligator?
Calvin: [nodding] turtle eat alligator
And he's right! There was a turtle biting the alligator's tail! Delayed speech or not, I think he is such a smartie.

It is wonderful that he is able to communicate so well. I am optimistic for him learning to talk this year, but I know he will do it in his own sweet time like everything else :) In the meantime, I am considering letting him try out an AAC (adaptive and augmentative communication) app. Dr. Johnson said there was no harm there. It would make it easier for him to talk to other people who aren't familiar with his sign language and it might open up an opportunity for him to express more thoughts than he is able to with signs and even start using core words? It's possible. Also, it is very likely that Henry would benefit from an AAC app in the future. I started looking into apps, but I have hit a couple of roadblocks. The apps that really look the best are very expensive, like Speak for Yourself at $200. Also, the tablet we have is only 7" and on that size tablet the buttons on some of the apps are very small. I'm almost willing to spring for SFY, but I feel like I'd also have to buy a new tablet and the cost for both would be a lot for us. I'm trying to find a good starter app, preferably free, with a happy medium between the size of the buttons and the number of words on each screen. If anyone has suggestions, please share!

1 comment:

Not quite your typically developing family of four...

I'm a teacher turned SAHM married to an engineer dad with two adorable boys. Both of our babies have chromosome anomalies: one is missing a piece (22q Deletion Syndrome) and one's got an extra piece (Dup15q). Life with Calvin and Henry is one wild ride, so we are hanging onto the things we love and starting new family traditions along the way. Thanks for reading!